I Was Blamed for My T1D Diagnosis


Flaws in the system

For many years, having a voice as a person living with diabetes in Uganda seemed so impossible to me, that I could have never even dreamed it. In recent months, I have met two type 1s, one who has had it for 40 years and another for 34 years. I hold them in very high regard because at one point, I never believed that I could live a healthy life with diabetes, let alone live at all. Diabetes had all the power while I just kept getting shocked by the punches and learning to roll with them, and there were some really hard ones.

Our healthcare system, like most, is flawed. So, like most patient support and advocacy groups, we are doing our part to shed light on the complex challenges that children, and young adults living with type 1 diabetes face, and find solutions to them.

Being largely dependent, children and young adults, with a whole world ahead of them, are often at a disadvantage when faced with our healthcare systems in Africa that are designed to treat and manage infectious/communicable diseases. This mindset sets many up for failure as they believe it is the responsibility of the doctor to make them better by prescribing medication, completely oblivious of the patients’ responsibility in the equation.

Children and young adults are still often misdiagnosed, mismanaged with drugs meant for type 2 diabetes, still suffer rejection, discrimination and blame from families and communities. Patients are often un-empowered in as far as coming to terms with a diagnosis goes and thus are poorly equipped to make the necessary steps and changes to address said challenges and improve outcomes. The chronic care model is still largely unimplemented here, especially in private practice, and children and young adults are often fatal victims of the oversight. Public hospitals are overwhelmed by the numbers of patients, therefore the few doctors and nurses cannot give a full service package as stipulated in the chronic care model, even if they wanted to. Meanwhile, the prevalence of diabetes is growing rapidly every day, expected to double in a few years with many healthcare practitioners calling it an “epidemic.”

My story

As a result of our flawed system in Uganda, I was diagnosed with diabetes and managed with metformin tablets for three years. Another friend of mine endured pills for six years. Upon diagnosis, my schoolmates and teachers blamed me for my diagnosis and I started blaming myself too and felt that I didn’t deserve to put financial pressure on my family to provide medication for something I caused. So I suffered for it, unaware that I actually didn’t do anything to bring it on myself. Unwittingly, many of us, at one point, have fallen prey to the myth that traditional medicine can cure diabetes and have been subjected to it due to pressure from family, friends, elders and religious leaders.

It wasn’t until seven years after my initial diagnosis that I got real information about type 1 diabetes including the need for testing blood sugar, keeping records, the need for two different insulins, keeping blood sugar in range to avoid organ damage and complications. I was in my third year of undergrad. All of it got me panicked as I wondered how many of my organs had already been damaged at that point. I have had many days where I wondered why no one tried to help me, no organizations supported diabetes patients like they did with other childhood illnesses. I later realized that people in our society generally blame people with diabetes for bringing the disease on themselves unlike children with the trait for sickle cell or even HIV.

I never knew it was possible to get an HbA1c below 7%. It was the goal set by my doctors but I just felt that I would never achieve it because whenever I tried, I had so many frustrations and swings of “hypos” and rebound “hypers,” not to mention hypoglycemia unawareness and severe hypo episodes where I passed out in taxis and at a bank once. Although I had a background in biology, food science, nutrition and health, none of it connected the information dots for me. Everything changed when I read the book, “The Diabetes Solution” by Dr. Richard Bernstein and “Bright Spots and Land Mines” by Adam Brown. Type 1 diabetes began to make sense and I finally got my HbA1c down to 7.4%, then 6.9%, then 5.6% and I finally understood the importance of diabetes education, which, in our medical system, was barely available and was difficult for our overwhelmed medical personnel to provide.

Silver linings

My story, while unfortunate, really opened my eyes to these gaps in the system and I knew I was not the only one that had gone through such hardships. I knew I had to speak up and find others going through the same struggles. The Africa Diabetes Alliance was started in February of 2018 and has since discovered and assisted at least eight young adults with type 1 diabetes (T1D) get off oral type 2 medication and access insulin, educated 113 individuals with type 1 diabetes and at least 300 individuals with type 2 diabetes. We are providing children and young adults with diabetes medical alert bracelets and identification tags for emergencies, we have held two major diabetes education events that have received rave reviews from participants, carried out research into patients’ experience with diabetes and we advocate for type 1s at the annual Diabetes Scientific Conference hosted by the Uganda Diabetes Association. While diabetes education is currently not a recognized profession or part of the diabetes care interventions, the results that we are seeing are proof that it should be an integral part of our patient care model. Being a patient and seeing other patients that have found transformative benefits through the program, both personally and professionally, and seeing patients take the initiative to advocate for it, gives us hope that it will be adopted with time.

In the future, we plan to support children and young adults with T1D from disadvantaged backgrounds to access formal education and vocational training so that they can take care of themselves long-term. We also hope to get funding to go out into the various communities to educate the people about diabetes and help reduce the bulk of misinformation that puts many of us in danger. We want to give people living with diabetes a choice in improving their care, management, health and quality of life by providing books, information pamphlets and training sessions to empower more type 1s to improve their management, health and quality of life. We want to show others that it can be done with adequate education, knowledge and support. Africa Diabetes Alliance is also grooming more type 1s to be leaders in this space and advocate more for themselves and their fellow patients because we are stronger together. We also realize that type 2 patients are also struggling just as much and we are working on including type 2 education programs. We realize that just having someone to look up to can be a powerful motivator to improve one’s health so we are striving to make diabetes visible in a positive, empowering, inspiring way and hopefully make it better for all who will be diagnosed in the future. We have a long way to go to improve services and diabetes care in our country but we are hopeful that our voices and activities will make large strides in accelerating the pace.

Africa Diabetes Alliance to me means that we, as people living with diabetes in Uganda and Africa at large, get a choice, and a voice, in determining our health, what we want for ourselves, how far we can go and how much we can do. We are disarming diabetes daily.

WRITTEN BY Edith Mukantwari, POSTED 06/24/19, UPDATED 08/04/23

Edith Mukantwari is a Ugandan living in Kampala, a public health activist, nutrition and diabetes education advocate as well as an aspiring diabetes educator in training. She has also lived with type 1 diabetes for 14 years now. Being in the company of fellow diabetes warriors is one of her greatest joys, and she looks forward to meeting and hanging out with more of them every single day. The highlight is hearing their stories, their triumphs, pain and hopes. Edith's "why" is to help people ease the weight of living with diabetes in some way, even just through support and encouragement and most definitely through diabetes education because those really transformed her management for the better.